Category Archives: adverse reactions

Well, mostly house-bound due to the migraines and related symptoms and episodes. I go to see my therapist and to doctor’s appointments (too many), but otherwise I go nowhere right now. I missed all the winter holidays with my family (who are almost next door) because noise and light and visual stimulation would just make the migraines worse. I also did not go to mother’s day at Hub’s mom’s house, but for more reasons than the migraine shit.

I completely changed my diet for 5 months, eating no grains, no sugar, no dairy, no gluten (well, I’ve been that way), no nightshades. I’ve lost 45 pounds (that I could afford to lose, but I lost it over 3 months which is too fast) and my food anxiety is still here. I eat the same basic foods over and over again, and I don’t eat any snacks or drink anything other than water. At the moment, I continue on this very restricted diet because I’m afraid to add anything back in because it might trigger an episode of vertigo or nystagmus.

I thought I was doing better (see my last post) but then I had multiple episodes of vertigo and nystagmus again, even when I didn’t change a thing I was doing or eating. Horribly depressed, we squeezed onto the specialist’s schedule again and made the trip to see him. One of the things he had given me initially was a prescription for klonopin and zofran. He told me to take both for the drive to his office about 40 minutes away in the city. I did, and had a very disassociated conversation with myself while we were driving and waiting for the doctor. Needless to say, if I have to use the klonopin again (it’s a vestibular suppressant), I will only take half a pill.

The specialist told me I had done all I could with diet, so he wanted to put me on a preventative medication. Unfortunately, there’s no targeted migraine medication (yet), so everything is off-label for other issues. After talking about my sleep issues, he offered me a tricyclic anti-depressant at very low doses. I have medication anxiety due to my incredible sensitivity to medications of all kinds. The first two weeks I had to wait until Hub was upstairs with me and he had to literally hand me the pills. After that (and talking to my therapist a lot in therapy), I tried to just consider the pills with indifference rather than with fear or hope. I take them okay now, but…they have side effects of course (including incredibly vivid horror nightmares that I’ve woken Hub up in the middle of the night because I’m screaming in my sleep). Even at low doses, I am sensitive. And in fact, I had started making the rounds of testing and other doctors because my hands and feet started feeling incredibly cold and both fingers, toes, and feet started turning blue-purple. Talk about anxiety! I tried to reduce my dosage of the medication, but my migraine symptoms started coming back the very next morning. So after five days of that I went back up to the higher dose I’d been on for 3 weeks and I went for ultrasounds of my legs and the arteries in my legs (two different tests). I also saw a rheumatologist and then a vascular surgeon because one of the ultrasounds came back showing that I might have an issue with an artery in my ankle or something? In the end (and this is from Monday of this week) both the rheumatologist and the vascular surgeon said this is Raynauds due to the medication. It’s been suggested I wean off the meds and try something else, although Raynauds is generally not dangerous just inconvenient and annoying. At the moment, though, the meds are helping me to some extent so I need to decide which is better, stay on with side effects or go off and feel like absolute shit while trying another med that may or may not work.

So for the moment, I’m holding on the current medication at the current dosage (MAV specialist wanted me at a slightly higher dose than I am now) until after I see the cardiologist tomorrow because the meds I’m taking could have (or be having) heart implications for me. Another reason I might need to consider switching to a different preventative.

I’m tired all the time, more from anxiety and stress than anything else. Hub is still taking care of so much, and I worry about him. We have someone coming in once a month to do a heavy cleaning of the house, but Hub tries to keep up with everything in between. I barely see my family, I don’t go to any gatherings because the noise and visual stimulation is too much. I don’t see or talk to any of the few friends that I have. I don’t crochet, I don’t read, I don’t use the computer. This is the first time I’ve been on the laptop since my last post in January. I mostly use my iPad and phone, and even then not that much and it does bother my eyes and head.

Meanwhile, I need to find a new neurologist because the MAV specialist said if I’m going to change medications he doesn’t want to deal with it. Which was disappointing and frustrating. He said if his first line of medications doesn’t work with a patient, he then suggests they have their primary doctor manage other medication trials…but I don’t want migraines managed by a primary. And plus, I have to find a new primary because during this round of *shit* hitting the fan (blue fingers, blue toes, was it a blood clot or peripheral artery disease or…) she ordered two tests but MIS-ordered one of them. So I had to go to two different testing locations when I could have gone to one, and I had to pay for two tests when it should have been done in one. AND THEN when one of the tests came back she sent me a note in my portal saying everything looked fine, only I pointed out that the radiologist’s note said one of the results noted “diffuse disease.” And she wrote back, “Oh, I must have been looking at the wrong test results, thanks for pointing that out” and then she sent me referrals for the rheumy and vascular doctor. WTF. How do I trust anything she’s done or said over the 12 years I’ve been going to her? She isn’t reading the reports or paying attention to the results or whose test is whose? W.T.F. So yeah now I gotta find a new primary and start all over again with my complicated medical history. Sigh.

I hope the meds continue to make me feel less awful and that I can keep taking them. Meanwhile, I muddle along. Maybe next week I’ll be able to crochet more, or do more with the dogs, or read a few pages in a book. Or maybe I’ll feel better for a day or two. I seriously don’t even know what to hope for at this point.

Preface: This blog is about me and my experience/feelings with regards to medications. It is not a judgement on or valuation of what anyone else does/feels with regards to their anxiety, depression, pain, insomnia, allergies…etc.

Monday morning I went to physical therapy for my shoulder. I’ve been going for close on to six weeks I think, but only once a week because they are so booked they can’t usually fit me in twice a week. This past Monday, I actually cried during the appointment because the pain was a) so bad and b) so frustrating. For the first three weeks or so, I was doing my exercises religiously at home. Then the therapist started adding in more and more exercises–without giving them to me in written or picture form–and I got overwhelmed and lost. I still try to do stuff daily, but it’s not everything I should be doing. Even so, I’m continuing to progress with my flexibility, but the pain continues. And I guess because the therapist is trying to push my range, the pain is…bad.

I am extremely sensitive to medications, and have been for most of my adult life. I don’t even take OTC pain killers like ibuprofin or acetaminophen or tylenol because they either screw up my stomach or they don’t work. I will take anti-biotics when prescribed, but I hate the experience and it’s mentally very challenging for me.

So last night I was in the shower and thinking about how much my shoulder still hurt, how sore it was, and I was under the hot spray of water and thinking…if I only took pain killers this would be a lot easier. And I knew…I KNEW part of the reason I don’t take pain killers or cold medication or antihistamines or sleeping pills or any other medication is that I would cause a bigger issue for myself. It’s NO LIE that I have medication sensitivities…I very much do have them. But maybe if I searched hard enough I could find things that work for me. I don’t do this…and here’s why.

About fifteen years ago I had a bad cold…a sore throat that was horrendously painful. I started using these OTC throat drops that had some kind of liquid medication in the middle. It was probably Haul’s brand, probably cherry flavored. I used them constantly in the beginning and they seemed to help. Then my throat started getting better but I literally got addicted to them and was continuing to suck on them like they were candy. I had to use them. I was addicted and I had to have one in my mouth almost all the time. It was vaguely terrifying when I finally realized what was happening (maybe like 3-4 weeks later). I quit them cold turkey and made Hub take the bag to work with him to throw away. I knew if they were in the trash in my house, I would dig them out and eat them. I don’t buy those kind of lozenges anymore, though in the last two or three years I have started buying honey-drops for sore throats.

I don’t do drugs and I don’t drink any alcohol and I don’t smoke. I never did any of those things. I feel like if I did or if I started using something like pain killers or anti-anxiety medication or sleeping pills, I would be using them constantly and for the wrong reason. I’d be in less pain, I’d probably have less anxiety, I might sleep more, but I’d also be zoned out and not living. I would just figure out the best way to shut myself off from everything and everyone in life by doping myself up on OTC or prescription medication. I would be gone, in every sense of the word. I’m not sure I’ve ever admitted this fear to anyone out loud, but in my heart I know that I’d use the medications to hide away. I’m not sure I’d be doing anything illegal or overdosing on the meds–or even overusing in any significant way–but I’d be using them in a way that would excuse me from life.

I feel like my anxiety over medications keeps me safe from all of this. Yes, I DID use some pain medication after my first surgery, but it was only a day or so (and so regimented!) and then I used tylenol. And then after a day or so I used nothing. The second surgery I didn’t use pain meds because I didn’t like the way they made me feel the first time, so I used tylenol as needed and I suffered through. I suffer through pain on a daily basis because I’m afraid of who I would become if I muted all the pain in my life…physical and mental.

Before I first got sick in 2001 (at 29yo), I’m not sure I ever really needed medications. Sure, I probably took cold meds on and off over the years, and never gave it another thought. Yes I did use Advil every month for cramps (which is how I ended up with stomach issues!) and probably occasionally for headaches. But after I got sick, everything changed, including who I really was. Who I really am.

The physical therapist said that I could go back to my Ortho doctor and ask to get a steroid injection to help with the pain as we continue with rehab, but I declined. I hate the pain I live with daily, and I hate the pain that reduces me to tears during PT, but the pain reminds me that I’m alive. I’m alive and I’m experiencing life.

This all sounds very fucked up. I guess I’m not surprised at that revelation.

NeurologyNeurology tells me my blood work is completely normal, which tested for myasthenia gravis and muscular distrophy. My EMG was “long and thorough” and normal. My first and follow-up physical exams were normal. In our follow-up appointment last night, the doctor finally admitted that he was looking for signs of MS–which he says he didn’t mention prior because he doesn’t like to frighten patients–but found none. After he said that, he said he could suggest a brain MRI, but found no symptoms to support getting one. I told him I’d had a brain MRI five years ago at an ER visit and that they found no signs of any issues (other than a schwannoma that was then “not found” at a follow-up appointment). He said if it was five years ago, and I was 40, that if I had MS, they would have seen signs of it already in the MRI. So that was even more reason to skip the MRI. His final words? Wait it out, see if any other symptoms come up, and go out about my life. He said I could try seeing a rheumatologist, but it seemed like a half-hearted suggestion.

Allergy
I saw the allergist on Tuesday. He was very nice, listened to everything I had to say and asked questions. He told me up front he didn’t think the fatigue/exhaustion was related to allergies, but said it was worth finding out what kind of allergies I had going on. He didn’t seem to understand my wheat “allergy” and asked a lot of questions…including when I told him that I’d been gluten free for at least twelve years, he said “and you’ve never eaten just a bite of anything? not even cake or cookies?”

W.T.F.

Would he say that to someone who had a reaction to peanuts in the past and thought they might have peanut allergies? “Not even a peanut butter cup? Not even half of one?” It was a little frustrating. I’m not sure if it was because I’m fat, or because he didn’t think the “allergy” I had was important enough? Either way, I just said, “No, it makes me feel incredibly horrible and I saw no reason to do that to myself on purpose when I knew what the cause was and it could be avoided.” He accepted that and moved on, but I suspect he didn’t really believe me. He tested me with the skin test, both a needle and a “scratch” test (not at the same time or in the same spot), including tests for wheat, rye, and barley. I had no reaction to any of the needle test–including zippo response on the wheat–but the scratch test (which is more “invasive”) popped “mildly” on dust mites. He did not test me for wheat on the scratch test… However, I will note, that when they did the scratch test version, within five minutes of them doing it, their “histamine” scratch area gave me the same response as what I get to eating wheat. My face started to get red and hot, as did my ear. When we went back so the nurse could read my results on my arm, we told the doctor, and all he said was “interesting.” But for me, it shows me that THAT response IS my histamine response, and points back to the wheat giving me a histamine reaction. In the end, he noted it as an “adverse reaction” to wheat reported by the patient. WhatEVER. I read that both skin and blood tests for allergies are only 60% accurate anyway.

Gyn/Oncology
I had my CT scan last Thursday. For the first time, I had terrible stomach issues after drinking the barium, which sucked. I made it to the radiology office, had more stomach issues, then had to stand and talk to the check-in person while she figured out what needed to be done. Then I had to go wait because they wanted to call my doctor’s office to confirm they didn’t REALLY need without contrast as that causes unneeded radiation in my particular case. When they finally got through to the doctor and recalled me to the check-in station, I was then informed that I had to pay for the CT Scan because I hadn’t met my deductible and that I had been notified ahead of time that I would put down a couple of hundred dollars in advance and follow-up the remainder payment later. I had been told no such thing…and I was PISSED and tired and felt like shit and I paid the advance because I needed the test and so what was I supposed to do? The woman doing the CT was SO NICE y’all. She really took care of me, was kind, and helped me work with my impinged shoulder. When we were done, I went back out to where my father was waiting for me in the car because I haven’t been driving myself due to my leg weakness and my imbalance and fatigue. The radiologist said my doctor would have my results by the next afternoon, but I heard nothing. I spent the weekend feeling mild terror, because when I was diagnosed with the cancer, my oncologist actually called me on a Sunday night during dinner. It was like a little bit of PTSD to get through dinner Sunday night, but no phone call came. I finally found the results online at my oncologist’s portal on Tuesday, which said the scan was clean. Oddly, I never got any notification or update directly from the doctor, which was unusual for him.

Insurance bullshit
As it turns out, apparently the radiology center was correct and I had to pay my entire deductible for the scan because I have SHITTY-ASS INSURANCE (this is new insurance for us since May b/c Hub changed jobs). I’ve never had to pay anything for CT’s or x-rays or blood work when I go to a lab/radiology center. And I also see now having inspected the insurance more deeply that they don’t even cover 3D mammograms. And not only do I pay deductibles for all this shit, but I also have to pay 10% co-insurance. Let’s not forget that I have a huge deductible for out-of-network which means they aren’t even close to covering any of my sessions with T. I seriously thought that we had the most obnoxioiusly horrendous insurance until Hub got a job offer from someplace new and we found that they were offering something called an EPO, which would cost us $50 more a month than we’re paying now and offer us waaaaaay less coverage. Apparently EPOs are the “new” thing that are essentially HMOs without needing referrals to see specialists, plus they have higher deductibles and cover fewer things. And insurance companies are suckering people in because they think the EPO is more like a PPO (higher level of coverage and out-of-network coverage) when in fact they are more like HMOs. So insurance companies are yet again screwing customers with lies and deceptions. Woo-hoo. Hub, in fact, turned down the job because of the health insurance and was then told the next day that he was the second “high profile” candidate in recent weeks to turn down positions because of the health insurance.

Primary care doctor
My last appointment with my PCP left me with the suggestion to go see a sleep doctor and/or the infectious disease doctor for chronic fatigue syndrome. She also told me she won’t write a note to the insurance company that indicates I have myofascial pain syndrome without me coming back in for yet another appointment–which will cost me even more money–so that insurance might consider covering some small portion of my trigger point therapy. (Neither would the neurologist, despite the fact that MPS is supposedly a neurology classified syndrome AND I was IN HIS OFFICE when I asked him.)

And so, here I am, in the same place with no plan forward. I am pushing myself to do more to see if I can just IGNORE the symptoms away. My imbalance is bad and I’m struggling to keep myself upright. I DID drive myself to PT on Monday, but it is literally five minutes from my house, on two roads that see minimal traffic. When I talked to my PT person, she said she had a client who was diagnosed with a virus who had horrible fatigue for over a year…but that after that she was fine.

I am burned out on doctors. I don’t know what I’m going to do now. Wake up, step forward, keep going. Try not to let my anxiety get the better of me as much as it has. Accomplish things when I can and celebrate when I do. Rest as needed.

So here’s the history on my sinus infection and the antibiotics I was prescribed.

I’ve taken 8 days of bactrim, 2 pills a day. After the 2nd full day, I have been able to take the pills without having Hub sit with me for an hour. Today I took it after he left for work so I was home alone! I have four little shitty pills left in the container. In addition to all the stuff I’ve previously talked about–including HORRENDOUS heartburn/reflux–I’m now getting itchy. Mild but diffuse. My head, my arms, my back, my legs, my face, my hands, my ears…all little creepy crawly itchy spots. No rash, thank goodness, but itchy.

The heartburn has given me pain in my stomach in addition to chest-heartburn pain, throat burning, inflamed throat-feeling, and it has given me the GERD cough.

I called the doctor’s office twice, and both times I pushed the button to “speak to a staff member” and both times I literally let the phone ring for 3-4 minutes before hanging up. I left a message for my doctor in my online portal, but sometimes they don’t respond to that for a day or two. I ended up calling back and pressing the button for scheduling. The woman who answered said they are really busy (great excuse) but she took the message for me and forwarded it to my doctor’s office. She said either the doctor would call me back or her nurse would.

I do not want to take another pill. I’m concerned this is the beginning of an allergic reaction with hives and the whole schmear. As it is, it’s going to take 3-4 days for the medication to get out of my system…I could possibly still get hives or more itching during that time. The problem is, I don’t want to have to start over with another antibiotic. Bleh. I’m crossing my fingers that the doctor says 8 days is enough for now and to see how I feel in a week or two.

The smell SEEMS to be abating somewhat, but it’s not GONE. I hope it gets gone because it’s still really irritating. I’m half concerned that I’m getting used to the smell and won’t be able to tell if it’s really gone or not.

SO the doctor’s nurse just called me back. She asked if I had a rash or hives with the itching and I said NO. She said that itching is a side effect of bactrim, and as long as there’s no hives or rash, I can try to finish the last four pills. She said that an actual allergic reaction would include hives or a rash, versus just itching. She recommended benedryl to help with the itching. I don’t take benedryl–or anything if I can help it–so I haven’t decided what to do yet. I haven’t had itching overnight, so I might try to take another AB dose tonight and see how it goes. I mean, I only have FOUR PILLS (two days) left, I don’t want to start all over with a new course of antibiotics if I don’t have to.

But maybe I’m going to ask them to put bactrim on my no-no list from here forward.

So I’ve taken six pills so far for what my doctor diagnosed as a sinus infection. I wanted to make note of what has been happening with the bactrim, at least for my future reference. Here’s what my historical experience prepared me for:

Upon getting my ABs, I come home and go look up my blog post from when I had to take these particular ABs, and I apparently have nausea, bad taste in my mouth, and dry mouth (editing to add, and dry/itchy eyes near to the end of the course of ABs) to look forward to for ten days at least. Two pills a day over ten days.

I’m definitely getting a lot of heartburn/acid reflux. My appetite is nil and the nausea is there for sure. My stomach hurts almost all the time, but that could also be from the acid reflux/heartburn. What is also a bit distressing is that last night before dinner (after the 4th pill at 9:30am that morning), I had a really bad hot flush on my face and ear, and I had anxiety. I’m not sure if the anxiety came from the hot flush or from the ABs. So I took another pill this morning at about the same time as yesterday…and tonight the hot flush started again before dinner. I didn’t even wait this time, I just got a cold pack and put it on my face until I was pretty well frozen. I didn’t get the anxiety, but I also stopped the hot flush early on, so maybe I stopped the anxiety before it started.

There’s no discernible change in the smell issue, yet. I’ve been trying to use different essential oils to distract myself from the smell (I just realized I had some good oils downstairs I could use…brown sugar and vanilla!), but it doesn’t last long.

Last night we invited my father over for dinner since my brother (the one that lives with him) is out of town for several days. Then tonight we went out for burgers with him and my other brother. Tomorrow Dad’s going to the grocery store with us in the morning, basically because he’s tired of being stuck in the house alone. He and I talked about how hard it is to be alone in the house all the time (while his house-mate is out of town), and I told him how concerned I am about being alone when Hub goes away. I told him I might end up sleeping there at night and he said if I did then they would be able to help me with the dogs in the early morning hours. I said I’d let him know. I’ve been going out for walks every day and when I get to his house, I call him to tell him to send his dog into the yard with us…sometimes he comes out to chat at that point. It’s hard because I used to do this to go hang out with Mom…and it’s not as easy to find things to talk about with Dad all the time. But I’m trying t keep up with the walking outside, so if he wants to chat with me he’ll have the opportunity.

I’m really tired of feeling so crappy. I want to regain my energy. I want to move forward.

Well, I won’t go into all kinds of details, but still, you’re forewarned.

I was talking about some anxiety in my last post. Here’s what is going on. I’ve been doing hypnotherapy during a few of my regular therapy sessions with T in order to work on my cardiophobia. We’ve actually been working both with CBT and hypnotherapy for my fear of exercise. Part of my fear is because of my heart, but part of my fear is also putting myself in more pain than my daily dose…on purpose. I’m in pain pretty much most days, but exercising means I’ll be suffering more pain because of strained muscles and such.

So part of my therapy is to exercise. Shocking, I know. We have both a treadmill and a recumbent bike in our house (the treadmill is like…oh, 15 years old, but it still works!), so I have options on what I can do for exercise with machines. The bike is newer than the treadmill and it has those little dohickies on the handles that measure heart rate, which is a no-no for me. Just watching the heart rate go up is an anxiety trigger. So many people say exercise helps their anxiety, but it’s actually a major trigger for me. I started riding the bike (I figured it was lower impact on my arthritic knees than the treadmill) every night, with the intention that I was riding it to work on my fears, not on my weight loss. It gave me permission to see the exercise as something different…not to be perfect at it, not to think that if I only ride it a few minutes every night that it was a failure because a few minutes is a waste in the weight loss world. No, it’s part of my therapy, part of my recovery, and even sitting on the damn machine is an accomplishment.

I started slow with the bike, literally and figuratively. And I met my first goal of riding the bike three days in a week…and then I just kept going. I’ve been able to increase by one minute since I started. I’ve learned not to put my hands on the heart rate dohickies…and if it is too tempting, I’m going to put socks over the handles to make them not work. I listen to a little music, I play a game or two on the iPad if I have it. I go in, I get on, I ride, I leave, I recognize the accomplishment of what I’ve done. I went ten days. Some of the days I could have talked myself out of it (the a/c upstairs died again…my knee hurt, I had another owie which I’ll explain shortly) but I didn’t talk myself out of it. My mental recovery seems to be so much easier for me to work on than my physical. I haven’t really ruminated on that very much, but I suspect that is coming in therapy soon.

Monday night I went to shower and I realize there is a redness under my right boob. I’m endowed and…droopy. I’ve been that way all of my adult life, I’ve never gotten a heat rash or sweat rash under my boobs before (I am wondering if this is because of the surgical menopause and hormone issues). I don’t sweat like normal people. My first thought was oh shit it’s breast cancer because it was only under one boob and I know that there are some breast cancers that present that way. I managed to convince myself it wasn’t cancer even before the redness showed up under my other boob. At that point I was pretty well sure it was a heat rash (or sweat rash) from riding on the bike. So now I’ve got knee pain, foot pain (stupid plantar faciitis) and underboobs rashes. *sigh* I go buy these things that go under the boobies that is supposed to help wick away sweat. The are uncomfortable and weird and they move around. Joy. I also buy some tea tree oil and a powder for rashes and fungus, in case it’s a yeast fungus under there. The under-boobie wicky thing seems to help but not make it go away altogether yet.

Wednesday night I’m on the bike again (I’ve even been able to ride when I’m home alone, which is a big deal for me because if I have a heart attack on the bike…and I’m alone… shudder) and I’m like what is that pain? It’s in the crease of my left leg where it meets my groin. And I’m thinking it’s another damn heat rash. Great. I put some gauze in the crease and try to deal with it for overnight. Next day, I put another clean bit of gauze there to keep the area from rubbing and getting worse and I go about my day. I get on the bike again last night and I’m like … unh, that hurts. I finish my predetermined ride and go shower and suddenly I’m realizing it’s not the heat rash in the crease of my leg that was hurting. I have a cyst…my guess is an infected cyst (I get sebaceous cysts under my arms sometimes, but not for a while) or it could be an ingrown hair. It’s, uh, down there. Ya’ll ladies know what I mean. It’s in an unfortunate place, making sitting, standing, walking, lying down all very very uncomfortable. Dammit.

I tell Hub about the issue (he looks somewhat horrified), I go to sleep and wake up this morning first thing to call my doctor’s office. I don’t want to mess around with this area, so I beg them to fit me in today. They do and I go see one of the other doctor’s in the practice. She says “abscess” but won’t otherwise identify if it’s from a cyst or an ingrown hair. She doesn’t want to do anything with it but suggests I see my gyno to see if they want to drain it or what. I tell her my gyno is an hour away and not likely to be able to fit me in today, so she suggests I see the gyno in their extended practice and she goes to make an appointment for me. When she comes back, she tells me I’ll be seeing the nurse practitioner that afternoon, and oh by the way here is a prescription for bactrum (antibiotics). Oh how I love pills. And ABs are my favorite.

I go back later to see the NP, who tells me she can’t drain cysts and all the doctors are booked. But she graciously offers to do a lookie loo to see if the cyst actually needs to be drained. She measures it and says it doesn’t look too big, but writes down the info for future reference in case I come back with an issue next week. “Good news!” she chirps. “I wouldn’t drain this. It’ll drain on its own. Take your ABs and use warm compresses and a sitz bath as often as you can manage.” We talk about timing for when the pain will abate and what to expect from the “draining” and I go home.

The first time I saw the cyst last night, it was white. By the time I got home and everyone was done poking at it, it was a purple-red. Yay. (I told you, TMI.) Upon getting my ABs, I come home and go look up my blog post from when I had to take these particular ABs, and I apparently have nausea, bad taste in my mouth, and dry mouth (editing to add, and dry/itchy eyes near to the end of the course of ABs) to look forward to for ten days at least. Two pills a day over ten days. The NP told me to be happy, the other option is something like 4 pills a day over 20 days or something ridiculous. But at least I have experience with this AB, so maybe I’ll be okay with taking it more easily. (Prolly not, but one can hope.)

This is what I get for exercising? One time I went to vacuum my bedroom…I plugged in the vacuum and 10 seconds later the circuit blew. I reset it, plugged the vacuum into a different outlet across the large room and 10 seconds later another circuit blew. I reset it, used a plug in the upstairs hallway and THAT one blew. I decided at that moment that G-d did not want me to vacuum. I wrapped up the cord and put the vacuum away. So, is this what I’m getting about exercising? Multiple messages saying “don’t do it!” Well, another conversation for therapy, I guess.

mostly because I wasn’t sure I was ready to really share. Sometimes I need time to process before I know what to say. Often when I’m in session with T, she’ll say things and I’ll just sit there for a minute before I say, “Oh-kay” even. And then I’ll need to take home what she’s said and really process it.

I’ve been processing the hell out of some stuff.

We went to see my mother’s new radiation oncologist, who was not upbeat about the situation. He, in fact, was very gloom and doom about my mother’s prognosis. She hadn’t had her PET scan yet, but he seemed to indicate that they weren’t likely to be able to “cure” my mother. We spoke with him for about 45 minutes, maybe an hour, and he tried to explain what was going on. The phrase that still eats at me is, “Chance of cure is not high.” It took me a while to think on the fact that just because she can’t be “cured” doesn’t mean she can’t live WITH the cancer. But at that point, we still had no results of the PET scan, so we had no decisions to make. She has since had her PET scan, but the radiation oncologist did not call her to talk to her about his suggested path as he was supposed to. She ended up calling his office three days after the test, talked to the receptionist and left a message (the receptionist said, “oh, it’s always good that the patient calls to remind the doctor he was supposed to call” and she was SERIOUS not snarky!) but didn’t get a call back. So she called her chemo oncologist and left a voice mail and HE called back right away. He said he was going to call the other doctor first thing this morning to talk to him. Then he sent her the written report. But reading those damn things is…hard. So we still have no set path, and at this point Mom has decided she wants a second opinion, no matter what.

The appointment was hard. The doctor put his hand on my shoulder as we were walking out of his office and said, “I’m sorry to give you such bad news.” It made my heart skip a beat. It’s like you aren’t sure what is exactly being said, but when a doctor says that to you point blank, you really get it. On the way home in the car, we were only mildly discussing the appointment, but also trying to talk about other things. I knew my mother was upset–this whole episode has been much worse than the original diagnosis, the hysterectomy, the chemo–so I was trying to do something to help her. I finally wrote on my notepad (I always take notes for her during appointments), “Today you are okay.” I ripped the page off and handed it to her, and I told her to just keep it in her pocket. Every time I see her she shows me that she has it with her. The truth is, today she IS okay. The recurring spots are small and localized (at least from the CAT scan that found them), and she’s not having symptoms. (The unfortunate part is that they are concerned it has made its way into her lymph system…and also that it recurred so quickly after chemo ended.) So my brother and my uncles (her brothers) are all researching and inundating her with information, but I’ve been staying out of it. I’ve been doing what I can do, which is talking about other things with her. Doing other things. Planning other things. When she brings something up about the cancer or the research, I talk with her. But otherwise, I don’t bring it up. She has enough of that from everyone else.

The same day my mom was getting her PET scan, I was in with the gyno CRNP talking about MY fantastic upcoming procedure. Apparently the next step for me is something called a hysteroscopy. Where they put you in stirrups and shove a camera and a tube past your cervix into your uterus–which they fill up like a water balloon with some liquid–and poke around. They also take “material” for biopsy to see what’s going on. This is done in their women’s procedure center, attached to their office, which fortunately is attached to a hospital. So I get to be awake, but I’ll be having all kinds of medication. Now I’ve had a biopsy before, but no camera. This is supposed to take a little longer and likely be more uncomfortable than just a biopsy because the camera is larger and there’s more that needs to be done. In preparation for this fantastic voyage, I get to start my week by taking 800mg ibuprofen today, 2x a day, for two days. That’s today, by the way, and I’m home alone. So I have no Hub to be my safety person as I take my pills. I know it sounds weird because we’re talking about ibuprofen, but I haven’t taken ibuprofen in 15 years. I take nothing, other than the occasional antibiotics and only recently that stupid progesterone. I don’t even take tylenol or aspirin. So I get to take that ibuprofen with lunch, then again with dinner. Then 2x tomorrow, as well. AND I get to take something weird tomorrow night to “soften” my cervix in preparation for the camera. And then morning of the procedure, I get more ibuprofen AND a beta-blocker (which the doctor says is FINE with my PVCs) in preparation for counter-acting the epinephrine I’ll be getting directly into my cervix during the procedure (which causes people to be “jittery” and anxious!). I’m so unhappy about all these medications, I can’t even explain. I’ve been blocking this whole thing out until this morning so I wouldn’t have to think about it. I asked if they were going to be monitoring me, and the CNRP said they’d do my blood pressure ahead of the procedure, but during they basically just visually monitor me…and depend on ME to tell them if something is wrong. I wanted to laugh and cry, because those of you who are anxiety sufferers KNOW that we don’t interpret things–like pain, breathing, heart rate–properly when we’re anxious. Now the doctor DID prescribe me a couple of ativan pills in case I needed (or wanted) to take it the night before or morning of the procedure. I’ve had ativan ONCE in the hospital ER when they were putting me into the MRI. I don’t remember much about it, but I’m worried if I take the ativan (0.5mg) the morning of, I won’t be alert enough to tell them if something is wrong. I’m open to opinions on that from those of you who have experience with ativan.

I’m also concerned about being in that kind of horrible position for an extended period of time, due to my muscle issues. The CRNP keeps telling me that recovery shouldn’t be bad–lots of women go back to work the next day, some even go “shopping” the same day she told me–but I have muscle pain after going to an annual exam because of having to keep my legs open without any kind of support. So the CRNP offered me “candy cane” stirrups, which I found out later will sort of hang my feet in the air rather than me putting them into stirrups and having to keep them balanced. No idea if the candy cane stirrups will be better.

On top of all of that, I am trying to ignore the potential result of the biopsies they might get. This part has been really really hard, because it scares me the most.

I’m feeling overwhelmed between what’s happening with me and what’s happening with my mom. The potential scheduling of my procedure caused me so much stress because I KNOW it’s going to take me a couple of days to recover, and I was worried that my mother was going to have an appointment during the time I was unable to get around to go with her. I tried to work things out, but we had no idea what timing was going to be with her scan and her results and etc. As it turns out, because she’s considering a second opinion, I should be okay by then to go with her. And if not, my uncle (her brother) has really stepped in to attend appointments…he has some medical background, so he understands things differently than we do.

So just the length alone of this post should indicate my mental state, eh? If you’ve read all of it, thank you. If not, no worries. I just needed to be able to vent AND put this all done for posterity.

(and for record’s sake, my PVCs have been milder and less often in the past two or three days. I have no idea why.)